Inaccurate test results |
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krisa 
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Joined: May 21 2008 Location: Portland, OR Status: Offline Points: 1090 |
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 Posted: May 31 2009 at 8:03am |
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I appreciate this thread and the information provided.
nancy, there is a connection with low levels of vitamin d and MS...and we know Lori takes her vitamin d. it does make one wonder if her body hasn't absorbed vitamin d properly, and how many of us might have the same problem.  |
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Yankeespie
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Joined: Mar 20 2009 Location: Maine Status: Offline Points: 41 |
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Posted: May 31 2009 at 9:12am |
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Does anyone realize just what it takes for a person like (Nancy) to pour her heart out to all of us each and every day?
I've been where she is now, trying to show people the truth, for their own good, and being called names like I was here on this site one time.
You people just keep listening to Main Stream Media, the doctors, (that have been taught by the Phram. Co.), and wonder why there is NO CURE! You just keep putting money into their pockets, and make them richer and richer, while more and more of us die every day!
I'll say this one time " I believe so strongly in my gut and in my hearts of hearts, that their conventional protocol for curing CANCER is slowly killing each and everyone of us! And that is why I choose not to take their Chemo Poisons! If its God's will that I die, than so be it, it damn sure won't be from their hand!
Krisa---
if you re-read the thread you would see that because of the wrong test results preformed at the hospital Lori cut back on her Vit D3. As far as I am concerned she should sue them for malpractice if she should develop MS or any other illness due to it!
Isn't there anyone that listens????
We need to stand up and fight all this BS. They treat symtoms, not the cause! Not only with cancer with everything! The tests Lori had we should all be having every year, why don't we you ask! Because they are in the buisness to keep us coming back and giving them their paycheck! It's as simple as that!
There is no other reason why they don't look for the cause first and than treat the illness!
What pee's me off the most is, that while you people stay in your comfort zone, I most likely will die and so will you in the long run. I'm on a sinking ship and you all are the anchors that are sinking it! Because it's just too much work for you to do the research that needs to be done to wake yourselves up. Its much easier to stay in that La La Land you so despartely hang onto.
Huggggggggggggggggs,
Bev
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Dx 2-10-09
Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: May 31 2009 at 9:26am |
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Whoa let's calm this down please.
It is everyone's personal choice as to how they are treated or not treated and we show our respect for their decisions.
We do not attack other members in this forum.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Yankeespie
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Joined: Mar 20 2009 Location: Maine Status: Offline Points: 41 |
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Posted: May 31 2009 at 9:50am |
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Excuse me Pam... who did I attack?
Respectively, Bev
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Dx 2-10-09
Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: May 31 2009 at 10:02am |
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Bev I am not going to feed into this but I will say that there is no doubt in anyone's mind how hard Nancy works for all of us and we love her dearly for doing so and for being Nancy
Edited by trip2 - May 31 2009 at 10:03am |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: May 31 2009 at 10:24am |
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Bev, everyone is doing the best they can. The researchers do the best they can to understand the disease and develop treatments. Doctors do the best they can coming up with treatment plans for every woman with cancer. We do the best we can in selecting doctors and treatments. It is all imperfect, and the state of medicine around cancer is very primitive. No-one knows how to cure it. I guess anger is natural, but I don't know that any person here or elsewhere really deserves it. We're in a tough circumstance, is all. Life is full of trials. People suffer. Suffering of many kinds is inevitable for every person on the planet, with or without cancer. The question is what we do with it. Do we shut down in anger, or do we do our best to open our hearts to love and life's many blessings?
Peace, Denise |
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DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: May 31 2009 at 10:35am |
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One more thought related to this:
Correlation is not the same as causality. Low vitamin D may be correlated with cancer and other illnesses, but that doesn't mean that low vitamin D causes these diseases, or that increasing one's vitamin D levels will reduce the risk of recurrence. The same goes for any other metabolite or hormone one can measure in the body. I wonder about the wisdom of taking high levels of just about anything. Almost every vitamin/spice/supplement known to inhibit some types of cancer can exacerbate other types, even subtypes within the same cancer 'umbrella'. It's hard to know what to do, what can help, and what might hurt. I write this as a fellow seeker, unclear on how to proceed in the absence of strong evidence from large, well-controlled clinical trials. Love, Denise |
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DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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cg---
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Joined: Jul 20 2007 Location: Canada Status: Offline Points: 1379 |
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Posted: May 31 2009 at 11:53am |
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Please, anyone sitting in the Comfort Zone Lounge save me a chair! I have been out of my comfort zone since May 2007 when they told me I had breast cancer. Who Me? Couldn't Me? I almost drowned with drenching night sweats and hot flashes - because I would not take those 'breast cancer causing hormones'....and they published the study 'the rate of breast cancer is down' - because less women are using hormone replacements (I think not). The women in my family used hormones from their late 30s and early 40s (I am the only one that has breast cancer). I used glass containers - I never heated in plastic ...I never had coffee or tea in styrofoam....I don't drink, I don't smoke, I don't even use a can opener very well because I buy fresh fruits/vegetables and shop the European way. I weighed 4 pounds more than I did 30 years ago. I loved the look of weeds long before it was fashionable or environmentally friendly - I stopped my husband from spraying our lawn 30 years ago when my children were born. I walk 7 days a week for 1-1/2 hours a day for the past 16 years....I eat my flaxseeds, my broccosprouts, my low-fat diet, drink my green tea, drink my water, avoid dairy...and I will radiate, and take my chemical cocktail or whatever else might give me a chance at living. I do not choose one from column A (the chemo toxic route), I do not choose one from column B (the organic natural route). I choose all of them and anything else that might make a difference - because the more time I spend looking into the cancer odyssey - the more convinced I am that we do not die from breast cancer - we die from the healthcare system that ignore us, dismiss us, misdiagnose us, misinform us, deny us and ultimately we survive not because of them but in spite of them. What ever option that I can use to evict the intruder that lives within me I will take and hope there are more on the horizon. I will not take out a membership to the Woulda, Coulda, Shoulda Club.....I took it all, I did it all. I made a conscious choice to live with one foot in the supplemental/natural world and one foot in the chemical world/nuclear world. Since it really is all just one big gamble I will hedge my bets by doing whatever it takes.
One of the things we should all demand as our 'right to life' is that our tumors are tested extensively so that we have the information that will take the guess work out of the game of chance they call breast cancer treatments!!
Connie
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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: May 31 2009 at 12:02pm |
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Actually the correlation is the point. When the body's defenses are compromised the triggers that allow cancer to develop open their doors. The articles are not prouncing that 'low D causes these diseases'.
What the articles are doing is reporting the current research results which are demonstrating that low levels of D are not only abnormally common in cancer patients (and the many other diseases it investigates) but that without the D, recurrence levels are extremely high.
By comparing D's with 'almost every vitamin/spice/supplement' which obviously haven't undergone the same research, you're denying the research and you're denying yourself the opportunity to investigate it for yourself and perhaps make use of it.
Yeah, we all follow lots of rabbit trails and fall down alot of rabbit holes when living with cancer and it is hard to know what to do, which way t turn, but with the D's we offered a broader range of research with more definitive results than we normally see. It is definitely worth it to take seriously.
Are you taking the bisphosphonates for prevention by the way?
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dmayes
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Joined: Apr 23 2009 Location: Alberta, Canada Status: Offline Points: 183 |
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Posted: May 31 2009 at 1:57pm |
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Bev, It is your choice to get angry - however I have found that site has opened my eyes to many options and remedies that I was not aware of by my docs. It has provided a place where women and men can communicate openly and be honest with each other. This forum has allowed us to combine as a select sub-group and share knowledge. We need to ask the doctors to do the same. I actually told my onc about this site - he didnt know it existed and was keen to get the web address.Maybe if we take a more pro-active stance we can help build a bridge over the huge chasm (sp?) the pharma's are creating with the docs and the reserachers. Sure they are in it for the money - and I am sure that if they found the cure - they would make alot more. I hope they are doing things for our benefit - it is all trial and error. You have made your choice and good for you.
You are right - we will all die - it is enivitable! But allow those of here to have our choice and respect that. I started out angry - like Connie - wondered how htis happened to me. But now I wonder how I can use my experience to help others as well. After all - I can't change what has happened to me - but I will try to think of ways I can make a difference to others. Having cancer doesn't give a defined expiry date - it is another challenge we face.
Nancy - wishing you and Lori lots of love and healing strength over the next few weeks. We are all thinking of you.
Cheers and hugs,
Debs
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Debs | Laugh every day, Love every minute.
Dx Mar09 - LB IDC 4.5cm - 0 nodes. BRCA - Cytoxin/Taxotere x4 end Jul09. ReCon surgery March10. |
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Yankeespie
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Joined: Mar 20 2009 Location: Maine Status: Offline Points: 41 |
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Posted: May 31 2009 at 2:10pm |
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I post from the heart and with love for my sisters, and the world as a whole. I lost both my parents, two of my moms sisters, and one of the sisters who had cancer at the time had to hear her 10 yr. old daughter Dx with Juvenile Bone Cancer and than watched her die just 2 short yrs. later. After she buried her, she had to continue with her battle until she too succumbed to the beast. My Mom was 35 yrs. old when she received her first Dx with uterus cancer that was in 1961, she did not have Chemo at that time they just removed her uterus, it was 8 yrs. later when she was Dx with bone cancer this go around she did receive both Chemo and Rad. she died 7 mos. later. Her first Dx was 48 yrs. ago!! Their doing the best they can??? Please tell me how they are doing the best they can! I have watched first hand what cancer does to a person, I watched 5 perfectly fit humane beings one day before receiving the Dx go to a bag of bones almost unrecognizable in very short time. How can ignorance by the medical industry be called doing the best they can? Aren’t Doctor’s supposed to heal? Aren’t they supposed to use whatever tool available to heal?? Why aren’t the Doctors standing up against the Insurance Co. in their patients behalf, the very same patients they are sword by Hippocratic Oath to heal? Insurance Co. are running their practices, and they cow taw to them. We don’t put up with Ignorance of the Law, but we except Ignorance in the Medical Industry and call it doing the best they can? When are they gonna be held accountable for their ignorance? When they turn a blind eye to what they know is not right, why aren’t they being held to the highest standards on Earth??? Please take a look at this link NO it isn’t cancer, but its more of what you call “Doing the Best they can”! http://iansvoice.org/default.aspx If you do click the link, please click the tab on top “Safer Vaccines” and read plz. You speak of anger ~ You bet I’m angry! Just open your eyes and heart, and than tell me you except anything but a Cure for Cancer and all other major illnesses! Until we all get angry and put a stop to all this, none of this will go away. Connie ~ Please don’t misunderstand I am not advocating one form of treatment over another! Whatever you have faith in is ultimately the RIGHT course for that individual! I support all of my sisters, in whatever they chose to do. If you believe Bubble Gum will cure you, than I’m all for it! It seems that because I chose not to have Chemo, I am not with you! Why is that? This isn’t a case of one side or another; this is about joining together for the same cause, a cure of cancer! I best end this because every time I look up there is another post! Hugggggggggggggs, Bev PS
I was resonding to the Thread Topic: Inaccurate test results
How has my response been turned into a Chemo / Non Chemo discussion! Dang I just realized I'm defending something I didn't even SAY! My anger as you all have deterimined I have "to set the record straight" is their cavalier attuitude about neglect in reguards to our health! Edited by Yankeespie - May 31 2009 at 2:31pm |
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Dx 2-10-09
Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: May 31 2009 at 5:41pm |
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To all,
I posted this in the resource forum yesterday, but not everyone has the time nor the energy, with all you are enduring, to go there and read, so I thought perhaps this may be of interest. Mainy had given this to me.
I made the mistake of sending it to my Lori, which of course when seeing what her D levels were last week, she can well imagine what they were at dx. The prognosis is not good for recurrence or survival from breast cancer if D levels are low when dx. But of course no one will ever know that due to the fact that probably one in 500,000 doctors ever check your levels at dx, or for that matter ever...unless you tell them you want them checked. Then you will most likely have to give them an explanation.
Just one more flaw with the medical profession, of which I have very little respect, primarily due to the fact that they are led by the nose (not really my choice of word), by the drug companies, and if a cure is found, they (the drug companies) will go out of business. That's not going to happen any time soon.
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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dmayes
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Joined: Apr 23 2009 Location: Alberta, Canada Status: Offline Points: 183 |
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Posted: May 31 2009 at 7:33pm |
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Nancy,
Do you know how long it takes for your levels to come up. I thought my doc ws doing the Vit D test - he said he did not. I have been taking vit D 1000mg since meeting him, and wonder if I should now get a test done - just to see the line in the sand? I guess I can go to my new doc and ask for one ? Or if I take any 3 weeks of vitamins and get that added to the bloodwork - how much inprovement can I expect.
As my onc is pretty switched on - and I am sure I asked him to run the test as I read that in the info - I was a bit disappointed that it wasnt there. Maybe he doesnt liek telling u s- as we know we are very low - then maybe we focus on the mortality and recurrence and dont put our energy into gettign better and enjoying our life.
Again - I am going to ask why they dont test and track that statistic - he seems very genuine and does know about the benefits of vit D.
Ah - the day 3 bone ache is beginning- hope the benardyll kicks in and gives me some slep tonight - last day to take it.
I am forwarding this on the my friends who kids are celiacs - might be good for her to read and maybe give vit d to her kids.
Sending you hugs and healing energy
Debs
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Debs | Laugh every day, Love every minute.
Dx Mar09 - LB IDC 4.5cm - 0 nodes. BRCA - Cytoxin/Taxotere x4 end Jul09. ReCon surgery March10. |
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mainsailset
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Posted: Jun 01 2009 at 9:42am |
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Debs, my doc put me on 50,000 iu of the D2 for 4 weeks and I went from 19 to 28 in that time frame....hope that helps.
Good for you for sending this on to your friends whose kids are celiac, I did the same for cousins and friends, and it brings up an interesting point, that celiacs often suffer from mal absorbtion, and perhaps we all do....
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Jun 01 2009 at 12:19pm |
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Hey Debs,
I really don't know how long it takes for the levels to come up, but I will email Ronda and ask her. I do know that when you go for the D level test you are to be off D3 for a few days, and that way you get a correct level....if you have the right lab testing for it. Ask where they are testing for D levels, and if it is Quest labs, tell them you want them sent somewhere else.
You also need to ask him if you can take more than the 1000, as that is not much for someone dx with cancer. A small child can take 2000 iu's daily and safely, so the vitamin D council says as an adult you require much more. From what you have told me about your onc, I too am disappointed for you that he did not do your levels. As I said in another post as soon as a women is dx with bc, levels should be done, and I think that should be a requirement.
For you not to have all tests results is just unthinkable, as how then are you supposed to manage your life. It's not a question of him liking or not liking to tell you, that is his responsibility and again...."first do no harm". He is putting your life in jeopoardy by not doing the tests and by not telling you the results. Also if your levels are low, then...if he is knowledgeable as to the amount your body needs....he should up the dosage, knowing that your immune system is not functioning properly. That's why we get cancer and many other diseases.
Since D3 is a hormone, it should start helping you almost immediately. You say you are having trouble sleeping, and Lori took Unisom and that helped tremendously. It is a sleeping aid that is not addictive. You might want to ask if you can take Melatonin also, which is also a hormone...a natural hormone one our body makes until about age 45 and then drops off sharply. I don't remember your age
 Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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